Soledad O'Brien Shares Family's Battle With Cholesterol

Who taught you how to swing?

Jonathan and Erin Karas and their 9-year-old son Max appear to be the picture of health, active, happy, and staying fit. But this family carries a genetic condition. It's called familial hypercholesterolemia or FH, which causes too much cholesterol to build up in the blood.

Five, four, three, two, one. Great job.

9-year-old Max has a severe form of the disease. So he literally gets the cholesterol scrubbed from his blood. Then, the blood is recycled back into his body. Jonathan Karas, who's 41, has been battling his own case of FH since age 13.

I just heard, oh, oh, do you have a family history. Oh, yeah, this grandfather, this uncle.

So you knew in your family you had a number of people who had very, very, very high cholesterol levels.

Yeah, my grandmother, my mother, her sister.

But you never necessarily connected it as a genetic disease.

Right.

It's estimated that more than one million Americans have FH, a genetic disease that makes receptors in the liver unable to remove excess LDL, or bad cholesterol. It puts people at 20 times the risk of early heart disease. And 90% of people affected don't even know they have it.

That's what's the scariest thing about FH.

You didn't feel sick.

Is that you don't feel sick. Yeah.

So at what point did you have the big giant wake-up call that you had a serious problem?

There was the heart attack.

So you were 28 years old. Yeah. That's an amazingly young age to have a heart attack. Yeah, and the nurse said I think you're having a heart attack. And that was the first time, uh, sorry, I heard those words. And it still affects me today obviously.

He was so young doctors didn't believe he was having a heart attack.

Immediately, I got asked by about 50 different people, did you do cocaine last night.

Everyone assumed it was drugs.

Yes.

Were there people who didn't believe you when you said no?

Yeah.

They thought you're lying. 12 hours later, Karas went under the knife. Three stent procedures opened up arteries that were nearly 100% blocked. Doctors immediately prescribed him cholesterol-lowering drugs.

After my heart attack, the cardiologist recommended to take a low dose of blood pressure medication.

Dr. James Underberg, director of the Bellevue Lipid Clinic in New York, says that drugs are required to treat this genetic condition.

And that's something that often, for a young, healthy person otherwise, it's hard to wrap their arms around. They say, I run. I eat right. My cholesterol is high. I must be able to fix it myself.

Those look like horse pills. Oh my gosh.

So this is the highest dose of atorvastatin.

SOLEDAD O'BRIEN: So the popular statin.

Yes.

Geez.

These are large. This is the 80 milligram. It's the highest dose.

Wow, wow.

But it works. Come on guys. Karas has been working at it with a daily routine.

[DRUMBEATS] He's in a band, so his cardio exercise is drumming, four to five hours each week. He and his wife Erin, who also has high cholesterol, are very disciplined with their low-fat diet.

I'm going to do baby spinach, a red bell pepper. I'm going to do some tomatoes, cucumbers.

Taking statins has made the biggest difference. Once high at 326, Jonathan's cholesterol is now down to 86. With diet and exercise, he's aiming to make it 70, considered ideal for people who've suffered a heart attack. He's not yet tried a new class of drugs called PCSK9 inhibitors, which can help lower cholesterol even further. Do you worry that you could have another heart attack?

Yeah, it's on my mind.

All the time?

Yeah, yeah.

Like every day?

Yeah, pretty much.

For Max, today's procedure will last six hours.

So it takes my blood, and it cleans it and puts it back in, which is actually kind of mind-blowing.

His more severe form of FH means more aggressive treatment.

I don't like seeing him have to deal with this, you know, probably 10 times worse than what I had to deal with. So it's stressful.

I can't even imagine a six-hour procedure every week.

Yeah.

You know, you get through this week, you know you come back next week.

I think it's more difficult for us.

Than for him.

Than for him. He's kind of used to it. He's very good about it. He knows that it's helping him.

Hi there. How are you, Max?

Max's gene mutation comes from both of his parents.

All right. Let's see how this sounds, OK. Max had a cholesterol around 1,000 when he first showed up, with normal being 100 or less.

By the end of treatment, Max's cholesterol is down to 35. The fix is only temporary.

I feel good physically.

SOLEDAD O'BRIEN: And emotionally?

And emotionally. There's ups and downs. I want to be a picture of health, even though emotionally it's more about him.

Your son.

Yeah.

A son he is teaching that caring for this disease is a lifelong commitment. For WebMD, I'm Soledad O'Brien.